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Sunday, November 13, 2011

Greatest Birthday Gift... EVER.

Since I can remember, I wanted to be a dad.

Most kids could tell you they wanted to be a baseball player, a veterinarian, a ballerina, a fire fighter or some other career goal. I had those too. Mainly stand-up comedian, SNL actor or radio personality were the things I wanted to do more than anything. Somehow I landed in TV, and I feel fortunate enough to never feel like I go to a “JOB”. However, professional aspirations aside, more than anything in life… I wanted to be a dad.

That opportunity finally happened on November 3rd, 2005. Born exactly on her due date, my beautiful Bianca came into the world… on my 34th birthday. When asked, “What was the greatest birthday present you have ever received?” most people have to think about it a little. Not me. Not only was Bianca the greatest gift I have ever received in my life, she continues to give and enrich it by teaching me to be a better man, husband and father every day we spend together.

Smiling from the get go. :-)

When Bianca entered the world, she was perfect. There were the appropriate number of digits, a full head of thick black hair, and a precious face that looked VERY familiar to me. As soon as she came out, her eyes were wide open and looking around very inquisitively. No crying. There was no mistaking who daddy was. Every nurse, doctor, family member that saw Bianca chuckled at our likeness. My wife even joked that she wanted a maternity test. The family rejoiced as the first baby of the next generation was introduced to the world. When mommy finally got the chance to hold her after the nurses cleaned Bianca up, no sooner was she in mommy’s arms that believe it or not… she smiled. It was beautiful.

I looked at my new family and marveled at this tiny little girl that changed my priorities and my life in an instant. She meant everything to me. She was part of me.

There is no other feeling like the bond between a father and daughter for a man. You feel fully responsible for her safety and well-being. Even the most passive of men can become ferocious warriors when there is a feeling that their little girl is being threatened. You are her protector, her champion. And that little beauty dressed in pink, smelling like lavender with the little hair clip and long lashes becomes more important than any Bears/Packers, Cubs/Cardinals, Blackhawks/Red Wings, White Sox/Twins, Bulls/Knicks game you could ever hope to see… and that means a lot coming from a guy like me.

Making the event even more joyous was the journey to fatherhood. It was not an easy one for me, and an unfair, painful and will-breaking one for my wife. We suffered through miscarriages, a still-birth, loads of complications, but all of those challenges made the high we felt of finally having our family more rewarding and joyous than anything I have ever experienced. Perspective is an incredibly vital component to appreciation, and we had plenty of perspective.

Bianca was the best baby first time parents could ask for. She was incredibly low maintenance. She barely fussed when she was hungry, if we had to leave her with a sitter or I had to leave to work, she never had separation anxiety. We could put Bianca down on the floor with her toys and she would play contently for hours. She would count with me to 10 at a very early age, and we would go through all of her favorite picture books and she would rattle off label after label, animal after animal. She loved to sing too. Even if she wasn’t really talking yet, she would sing a couple of the words but then babble the rest of the melody. My wife is an incredible dancer and she would put on some salsa, rock en español, bachata or hip hop and sweep Bianca up in her arms and dance around the room. I am a horrific dancer, so I would sit on the couch and watch the two most beautiful girls in my life move to the music with big smiles on their faces and marvel at their beauty.

Our first birthday party together was so great. Bianca had her little princess tiara and a pink magic wand. The whole family showed up. There was Dora everywhere, lots of pink and tons of cuteness. Bianca enjoyed her cake, but was not particularly thrilled by all the people. She definitely wanted to do very little with the other kids. I tried to encourage her to interact with the other little ones, but Bianca was very resistant. She wanted to do her own thing. Even when we broke the little pull-string piñata, she went to take the candy farthest away from the other kids.

When through poor family planning we gave birth to Sofie a year and 22 days later, Bianca was not thrilled. We were so anxious to get back to our Bianca that we got released from the hospital as quickly as was legally allowed. We brought Sofie home and introduced her to the tons of family members waiting for her arrival, and when we presented Bianca with her little sister she pushed her away. She was happy to see us though, and eventually we got her to pose with us and smile.

Not much after the birth of her sister, Bianca really started to shut down. The classic symptoms of regression kicked in, the avoiding of eye contact and the lack of responding to her name were all there. It took a friend of ours to point it out for us to finally admit that there could be something wrong. Ultimately that proved to be true.

But as I said previously perspective is a vital component of appreciation. When we received that autism diagnosis for Bianca, my wife and I were devastated. But after some crying and grieving I turned to my wife and reminded her that if on the day that we lost Angel (our stillborn daughter) we would have been given the choice of being parents but that the child would have autism… we would have taken the deal in a SECOND. We wanted to be parents. We had already decided that an amniocentesis was not necessary because we would want and love our child no matter what…

So as each year passes and Bianca and I celebrate another birthday, we have MUCH to celebrate. Bianca has progressed every year. As we celebrate her 6th birthday and my 40th we see Bianca doing things that at one point I wondered if they would ever be possible.

Autism is a difficult disorder to deal with for parents. It hasn’t been easy on my family. Despite the challenges and in spite of the looks we get from parents with neuro-typical kids there are so many moments that are fulfilling and rewarding. Too often, we tend to focus on the difficulties associated with raising a child on the spectrum and not enough on the positive moments. So I am taking time for my 40th birthday to focus on all of the positive moments I have shared with Bianca and that she has brought to my life.

Bianca has given me the gift of understanding, empathy, compassion, she has taught me patience, to appreciate the little things, unconditional love, to laugh harder than I have ever laughed, that things are just that… things. She taught me that actions are how you really show your love for a person… not words, and that a smile can make everything worthwhile. She has taught me the importance of believing in something and reaffirmed my belief that honesty, even when it makes you vulnerable, is always the best policy.

Bianca has given me so many gifts in the 6 short years that I have shared with her that I know I can never re-pay her. The best gift that I can attempt to give her is to honor and fight for her and to work every day to fulfill the promise that I made to Bianca at her bedside while struggling to get her to sleep in her own bed at 3:30 in the morning… that I would do everything in my power to fix the system, affect change, and afford Bianca every tool that she requires to be the best Bianca she can be.

Thank you to my beautiful bride Elsa for delivering the greatest birthday gift ever to me. I can’t imagine having our Bianca with anybody else. I know that the road has been challenging. Added stress has strained our marriage and sleep deprivation doesn’t lead to cool heads. Yet here we stand. Ten years of marriage and still counting. We have cried together, laughed together, and gone to war together fighting insurance companies and ignorant people. The good times have so outweighed the bad times that it seems silly to even try to compare them. Thank you for making my dream of fatherhood come true. Thank you for your strength and courage as we fought so hard to have our family, and now that we have it… I think it’s perfect. I love you.

Thank you Binks. Daddy loves you more than all the blogs and videos put together could ever even come close to describing. I am so proud of you, and to be able to call you my daughter.

4 comments:

Ah, Lou... you describe your journey so well. I rejoice for you all every time your girl leaps another hurdle.

And the love, regardless of difference- that I understand, too. The very first child with ASD I cared for in long day care made a huge impression on me, and set me onto a huge learning curve. I couldn't forget him. I ended up writing a story about him, something to help neurotypical children understand what's going on for a child with ASD. I've just added it to my blog at the end of this post: http://auntannieschildcare.blogspot.com/2011/11/gift-for-you-readers.html

I would love for you to be able to use this story to help others understand where Bianca's coming from. If you like it, you have my absolute permission to print it and give it to anyone you think might benefit from getting inside a child with ASD's head.

Mi amor, I love you and our babies so much. I feel the same way you do when you say you can't imagine having Bianca with anyone else. It's a journey that has been both rewarding and painful, but one that I wouldn't want to take with anybody else!